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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Hi everyone!
        
(Message started by: leogirl76 on Apr 26^th, 2006, 11:10pm)

Title: Hi everyone!
Post by leogirl76 on Apr 26^th, 2006, 11:10pm

Hi all, I'm Kristen, 29, from Massachusetts. I was diagnosed with clusters about 1 year ago after what I calculate to be my 3rd cycle. ABut 5 years ago I experienced pain with loss of vision in my left eye which noone was able to explain, 2 years ago it was a droopy eye with dizziness and headaches which I was initially told was Vertigo, last year it was dizziness, numbness and excrutiating pain which the ER gave my vicodin for (that was fun :( ) and finally I returned to the neurologist who diagnosed me with clusters. He started me back on Topamax which I had taken a couple years prior for my common migraines. That seemed o do the trick, I took it for a few months and had been fine for abut 1 year. I recently began having episodes of numbness, dizziness, vision disturbance (luckily no pain...yet) and am afraid it's the clusters rearing their ugly head. I'm waiting to hear back from my neuro and thought maybe you all could be of help! I was wondering if anyone has experienced similar symptoms and if they are cluste related. Anyway, from what I have browsed s far this site is an amazing resource. I thank you all in advance for your advice/support/info!

:) Kristen

Title: Re: Hi everyone!
Post by Mattrf on Apr 27^th, 2006, 4:27pm

Have you taken the quiz on the left yet?
It will give a good idea of what the symptoms are and if you really do have CH.
I would also recommend printing out as much information from this site on the medications such as o2 and take it with you to your doctor to help educate him on CH.
That is what I did and got my doctor to give me Verapamil and o2 and the o2 as most here will tell you is about the best line of defense you can have and has been a god send for myself.
Personally my last attack two years ago I do remember get vertigo but not this cycle and have never lost vision from CH, the droopy eye that has always happened to me along with the tearing in the same eye, also burning and stabbing pain always on the same side.
I also get a numbness that I can only explain as feeling like you do when the Novocain starts to wear off from the dentist and that goes from just above my eyebrow to my jaw line on the left side of my face and even feel it in my teeth.
The best you can do is educate yourself then educate your doctor and this is the place to do that.

Good luck and I hope you stay PF.

Title: Re: Hi everyone!
Post by leogirl76 on Apr 27^th, 2006, 7:10pm

Thanks!

I checked out the quiz the other day, it was definitely helpful. I've been trying to read through all the info on here as well. Last year my Dr. did give me o2 with the Topamax though the Topamax worked quickly enough that I didn't need it (or at least not yet). My nuero is really good. Very informaed and informative. I say him tody for my current symptoms and he's running some teststo try to figure it out. It's funny that you describe the numbness as how it feels when novocaine wears of because that is the only way I can describe the numbness I'm having in and around my mouth. I had the same symptom last year prior to the clusters that extended from my left temple to left jaw, so I'm glad to see it wasn't some crazy thing!

Thanks!
Kristen

Title: Re: Hi everyone!
Post by talbers on May 1^st, 2006, 4:44pm

leogirl76,
I'm a primary clusterhead, but occasionally I'll intermix a case where I get what appears to be a spot in my vision. Kind of like when you look at something bright, and it "burns" a pattern in your vision. It grows until I'm pretty much blind in one eye, then tapers off. What follows is a barnburner of a headache, though not really cluster like. As a side note, these are the type of headaches I got when I was a teenager. I transitioned to cluster headaches in college. It's worth noting, that during the vision loss portion, some other symptoms have been dizziness, tingling in my extremities (mostly hands, but feeling like my face fell asleep is also common). It's also worth noting that the blindness occurs on the same side as my clusters (right side for me). Don't know if that's what you've been experiencing.
talbers 1973 (Live in Northborough, MA)

Title: Re: Hi everyone!
Post by marlinsfan on May 2^nd, 2006, 2:13pm

Hi Kristen! Nice to meet ya! I lived in Weston and Brookline for many years in the 80's & 90's, in Florida now.... I'm "only" 37, so I decided to move to my retirement home WAYYY early.

I had a bad experience with dopeymax. My name for it describes what it did to me.

Nobody has given you this yet, so here it is. It has all the info on treatments for our condition:

http://www.brightok.net/~mnjday/chtherapy.pdf

Keep reading, and ask away. Lots of good folks here ready to share what we've learned.

Title: Re: Hi everyone!
Post by Dave on May 20^th, 2006, 10:09pm

Hi Kristen,

Verapamil is often the first medication that is given for cluster headache syndrome. You might want to ask your neuro about that and why you are on topamax instead.

By the way, I'm from Framingham, Mass.